Handicapped in plain sight: Underdiagnosing autism in girls

Autistic characteristics in girls are often misconstrued as shyness or rudeness, ultimately leading to possible social isolation and depression.

It took 10 years, 14 psychiatrists, 17 medications and nine diagnoses before Maya was diagnosed with autism.

Maya loves numbers and has an impeccable memory – especially of her multiple different diagnoses. Before she was 21, Maya was diagnosed with borderline personality disorder to agoraphobia, to obsessive-compulsive disorder. This just adds on to the fact that the autism spectrum disorder (ASD) is little understood.

For years, males were considered more likely to develop autism than females – just an erroneous idea from a 1943 study. Researchers are now beginning to realise that autistic females may simply be displaying symptoms that differ from their male counterparts.

The autistic spectrum encompasses a group of a developmental disorders characterised by social and communication difficulties as well as repetitive, inflexible patterns of behaviour. Sufferers can experience differences in perception, such as hypersensitivity to smells or sounds. However, these criteria for diagnosis are based almost exclusively on data from male patients.

Autistic women or girls can better ‘camouflage’

ASD is diagnosed quantitatively using tests and questionnaires, and qualitatively, such as the interests and behaviours the patient exhibits. Autistic girls have similar test scores as boys, but may exhibit behavioural cues that are less obtrusive.

Research shows that autistic women are often better at blending in socially, compared to their male counterparts, but still present a gap when compared to non-autistic women. Autistic girls and women can mimic normal socialising behaviours and are better able to disguise their behavioural patterns. Others may not fend so well, but may have their deficiency in social skills explained away as ‘shyness’ or ‘rudeness’.

Girls with autism also tend to be less restless than boys, although they are more prone to anxiety disorders, which are also less obvious to society. At the same time, their interests may appear more ‘ordinary’ – for example, liking dolls or Disney characters instead of odd subjects like trains or meteorological modelling. The difference between autistic and typical development in girls may be the ‘level of intensity’ rather than the types of interests they have.

Already, renewed investigation into how autism presents in girls is yielding remarkable findings.

“The most unusual thing we keep finding is that everything we thought we knew in terms of functional brain development is not true,” says Kevin Pelphrey, a leading autism researcher at Yale University. He is currently collaborating with researchers from Harvard University, the University of California, Los Angeles, and the University of Washington in a long-term study of females with autism.

“Everything we thought was true of autism seems to only be true for boys,” he added, of his preliminary findings. For instance, it is known that the brain of a boy with autism often processes social cues using different brain regions than a typical boy's brain does.

There is also a difference between the brains of autistic girls and typical girls. But interestingly, the brains of autistic girls resemble a typical boy of the same age rather than that of a boy with autism.

“[Brain activity in regions normally associated with socialising is] still reduced relative to typically developing girls,” Pelphrey says, but would not be considered “autistic” in a boy.

The danger of underdiagnosing ASD in girls

The under-diagnosis of autism in girls has a damaging impact on their education, mental health and overall development. Undiagnosed autistic women are more prone to psychological disorders such as anxiety and depression, as they are misunderstood or suffer through debilitating social confusion.

For Maya, she has been depressed since the age of 11, has crippling social anxiety and wrestled with anorexia in her teens.

It has been hypothesised that autism could manifest itself in women through anorexia. There is some evidence to support this – a 2013 study measuring the autism traits of a group of 1,675 teenage girls found that those with anorexia exhibited more of these traits compared to typical women.

“There are striking similarities in the cognitive profiles,” says Kate Tchanturia, an eating disorder researcher and colleague of Treasure's at King's College London.

More needs to be done for awareness of ASD in girls

A 2014 study also found that 66% of adults with ‘high functioning’ ASD reported suicidal thoughts, a rate nearly 10 times higher than that seen in the general population. The effort required to camouflage themselves socially may also lead to exhaustion, withdrawal, anxiety, selective mutism, and depression.

There are darker consequences for the under-diagnosis of autistic women. Due to their social naivete, such women may be at greater risk for victimisation, as they do not know when they should refuse an abusive partner’s demands, for example.

One study involving children with developmental disabilities found rates of sexual abuse 1.7 times higher than those in the general population. If they are diagnosed early and given access to the right resources, they will be able to work with family and/or therapists to develop clear sets of rules on safety.

Fortunately, researchers are attempting to fill up the gaps by conducting further studies to try and understand autism in women, and to adapt diagnostic tools specifically for female subjects. Awareness is growing, and with that, tolerance and understanding for those struggling with autism. MIMS

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Dr Dawn-joy Leong details how it is like to struggle with not being diagnosed with autism. Video credit: Channel News Asia.

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